RESUMO
Newborn screening (NBS) is one of the most effective measures of secondary prevention. While the benefit of NBS on the clinical long-term outcomes of children with inherited metabolic diseases (IMD) has been demonstrated, the potential burden of families living with an early diagnosed and treated child with an IMD has not been thoroughly investigated. The aim of this longitudinal questionnaire-based study on 369 families living with a child with an IMD was to investigate the psychosocial and financial burden following a true-positive NBS. The reported psychosocial burden differed between children and their parents, and was associated with the child's age, diagnosis, and treatment. At younger ages, parent-reported burden was higher for the parents than for the individual child, while it increased for children and decreased for parents as the child grew older. Furthermore, psychosocial burden increased if the child required a strict dietary treatment and was at risk of metabolic decompensation. Regardless of diagnosis and treatment, the developmental delay of their child independently increased the parental psychosocial burden. Financial burden was reported by 24% of all families, and was higher in low-income families and in families whose children required dietary treatment. In conclusion, a substantial psychosocial and financial burden was revealed for children and their families after true-positive NBS. Since this burden is likely to have a negative impact on the long-term individual health benefits of NBS, this study underlines the importance of regularly assessing the psychosocial and financial needs of these families.
RESUMO
BACKGROUND: Experiencing food allergies and food insecurity has been linked to socioeconomic, physical, and mental health-related challenges, but less is known about the intersection of these experiences. This study aims to better understand the impact of food insecurity on food allergy patients and their caregivers, with the intention of informing ongoing efforts to improve screening for food insecurity and mental health concerns and reducing their burden among households managing food allergy. METHOD: As part of a community needs assessment, a cross-sectional survey was administered to a large, national sample (N=5,940) of US households with at least one food-allergic individual, The Hunger Vital Sign was utilized to assess food insecurity, the Patient Health Questionnaire (PHQ-4) and Food Allergy Independent Measure (FAIM) were leveraged to measure psychosocial outcomes. RESULTS: Among respondents, 69.9% screened at-risk of food insecurity on the Hunger Vital Sign, while 5.6% reported very low food security. Both adults and children with food allergy (FA) from households at risk for food insecurity were more likely to report FA-related anxiety, anger, loneliness, fear of eating, and bullying victimization than their counterparts from households not at risk of food insecurity (p < .0001 for all). Among these specific experiences, FA-related anxiety was the most common (25.4%/30.1% of children/adults). Perceived risk of food allergy-related fatality was positively associated with food insecurity status. CONCLUSION: Individuals with food allergies who are concomitantly experiencing food insecurity are at greater risk of a variety of mental health concerns, including those specific to food allergy as well as more general anxiety and depressive symptoms.
Assuntos
Hipersensibilidade Alimentar , Insegurança Alimentar , Humanos , Hipersensibilidade Alimentar/psicologia , Estudos Transversais , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Criança , Adolescente , Inquéritos e Questionários , Estados Unidos , Ansiedade/epidemiologia , Características da Família , Cuidadores/psicologia , Saúde Mental , Adulto JovemRESUMO
OBJECTIVE: To evaluate the efficacy of a specialized inpatient rehabilitation program in patients with early in comparison with chronic epilepsy. METHODS: We performed a prospective, open pre/post study using a parallel group design. Patients with early epilepsy (EE, treatment with anti-seizure medication [ASM] ≤ 1 year) or with chronic epilepsy (CE, ASM treatment > 5 years) completed questionnaires at the time of their admission to the rehabilitation program and at discharge. Outcome measures comprised scales from the PESOS questionnaire (PErformance, SOciodemographic aspects, Subjective estimation; e.g., emotional adaptation to epilepsy) as well as screening instruments for depression (Neurological Disorders Depression Inventory for Epilepsy, NDDI-E) and anxiety (Generalized Anxiety Disorder Scale, GAD-7). Linear mixed models (LMMs) were used to determine the effects of the program in the total group and to compare the effects between patients with EE and CE. RESULTS: The analyses included 79 patients with EE and 157 patients with CE. Baseline comparisons revealed differences in disease-related and sociodemographic variables (e.g., patients with EE were older, those with CE had a higher seizure frequency and a higher rate of unemployment; all p < .01). LMMs showed significant improvements in emotional adaptation to epilepsy, depression, anxiety, overall quality of life and overall health as well as in perceived overall restrictions because of epilepsy and the subjective level of information about epilepsy (all p < .001). Despite the different duration of epilepsy, baseline levels as well as improvements did not differ between patients with EE and CE (all p > .05) except for the perceived level of information, which was significantly lower in patients with EE at admission and improved to a higher extent in this group (both p < .001). CONCLUSION: Both patients with EE and patients with CE who are referred to a specialized comprehensive rehabilitation program benefit from the participation in this program with respect to emotional adaptation to epilepsy, aspects of quality of life, and level of information about epilepsy.
Assuntos
Epilepsia , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Pacientes Internados , Estudos Prospectivos , Epilepsia/psicologia , Ansiedade/etiologia , Ansiedade/psicologia , Depressão/etiologia , Depressão/psicologiaRESUMO
BACKGROUND: The transition to parenthood represents a critical life period with psychosocial, and behavioral changes and challenges for parents. This often increases stress and leads to unhealthy weight gain in families, especially in psychosocially burdened families. Although universal and selective prevention programs are offered to families, specific support often fails to reach psychosocially burdened families. Digital technologies are a chance to overcome this problem by enabling a low-threshold access for parents in need. However, there is currently a lack of smartphone-based interventions that are tailored to the needs of psychosocially burdened families. AIMS: The research project I-PREGNO aims to develop and evaluate a self-guided, smartphone-based intervention in combination with face-to-face counseling delivered by healthcare professionals for the prevention of unhealthy weight gain and psychosocial problems. The intervention is specifically tailored to the needs of psychosocially burdened families during the pregnancy and postpartum period. METHODS: In two cluster randomized controlled trials in Germany and Austria (N = 400) psychosocially burdened families will be recruited and randomized to i) treatment as usual (TAU), or ii) I-PREGNO intervention (self-guided I-PREGNO app with counseling sessions) and TAU. We expect higher acceptance and better outcomes on parental weight gain and psychosocial stress in the intervention group. DISCUSSION: The intervention offers a low cost and low-threshold intervention and considers the life situation of psychosocially burdened families who are a neglected group in traditional prevention programs. After positive evaluation, the intervention may easily be implemented in existing perinatal care structures in European countries such as Germany and Austria. TRIAL REGISTRATION: Both trials were registered prospectively at the German Clinical Trials Register (Germany: DRKS00029673; Austria: DRKS00029934) in July and August 2022.
Assuntos
Período Pós-Parto , Telemedicina , Feminino , Humanos , Gravidez , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/prevenção & controle , Aumento de PesoRESUMO
INTRODUCTION: Previous research reported transactional relations between child functioning and parenting stress. There is limited evidence whether a transactional developmental model also fits children below the age of 12 months, especially in psychosocially burdened families. This study aims to test the fit of a transactional model during the first 3 years of life and examines whether the model differs between families with low and high psychosocial burden. METHODS: A total of 302 psychosocially burdened families were observed over 3 years at age 4, 12, 24, and 36 months. Child behavioral problems and parenting stress were assessed via self-report while psychosocial burden was assessed via external rating at baseline. Cross-lagged panel analysis was used to investigate the fit of a transactional model. RESULTS: A transactional model fitted the data significantly better (Δχ2 = 81.87, p < 0.001) than an autoregressive model reaching acceptable to good fit indices (CFI = 0.96, RMSEA = 0.09). The model indicated moderate stability within and reciprocal effects between child behavioral problems and parenting stress from age 12 to 36 months. From age 4 to 12 months, parenting stress predicted child behavioral problems but not vice-versa. Model fit indices and transactional relations did not substantially differ between families with low and high psychosocial burden, except for child effects on parenting stress during the first year of life, which were only evident in higher burdened families. CONCLUSION: Transactional relations among child and parent variables are evident in the first 3 years of life. Child effects in the first year of life may be restricted to highly psychosocially burdened families. Future research may focus on potential mediating variables such as parental sensitivity or contextual variables like significant life events. Targeted prevention strategies should be adapted to the level of psychosocial burden to account for the differing transactional relations.
Assuntos
Relações Mãe-Filho , Poder Familiar , Criança , Humanos , Lactente , Pré-Escolar , Poder Familiar/psicologia , Estudos Longitudinais , Autorrelato , Relações Pais-Filho , Pais , Estresse Psicológico/psicologiaRESUMO
BACKGROUND: The Covid-19 pandemic led to increased work-related strain and psychosocial burden in nurses worldwide, resulting in high prevalences of mental health problems. Nurses in long-term care facilities seem to be especially affected by the pandemic. Nevertheless, there are few findings indicating possible positive changes for health care workers. Therefore, we investigated which psychosocial burdens and potential positive aspects nurses working in long-term care facilities experience during the Covid-19 pandemic. METHODS: We conducted a mixed-methods study among nurses and nursing assistants working in nursing homes in Germany. The survey contained the third German version of the Copenhagen Psychosocial Questionnaire (COPSOQ III). Using Welch's t-tests, we compared the COPSOQ results of our sample against a pre-pandemic reference group of geriatric nurses from Germany. Additionally, we conducted semi-structured interviews with geriatric nurses with a special focus on psychosocial stress, to reach a deeper understanding of their experiences on work-related changes and burdens during the pandemic. Data were analysed using thematic coding (Braun and Clarke). RESULTS: Our survey sample (n = 177) differed significantly from the pre-pandemic reference group in 14 out of 31 COPSOQ scales. Almost all of these differences indicated negative changes. Our sample scored significantly worse regarding the scales 'quantitative demands', 'hiding emotions', 'work-privacy conflicts', 'role conflicts', 'quality of leadership', 'support at work', 'recognition', 'physical demands', 'intention to leave profession', 'burnout', 'presenteeism' and 'inability to relax'. The interviews (n = 15) revealed six main themes related to nurses' psychosocial stress: 'overall working conditions', 'concern for residents', 'management of relatives', 'inability to provide terminal care', 'tensions between being infected and infecting others' and 'technicisation of care'. 'Enhanced community cohesion' (interviews), 'meaning of work' and 'quantity of social relations' (COPSOQ III) were identified as positive effects of the pandemic. CONCLUSIONS: Results clearly illustrate an aggravation of geriatric nurses' situation and psychosocial burden and only few positive changes due to the Covid-19 pandemic. Pre-existing hardships seem to have further deteriorated and new stressors added to nurses' strain. The perceived erosion of care, due to an overemphasis of the technical in relation to the social and emotional dimensions of care, seems to be especially burdensome to geriatric nurses.
Assuntos
COVID-19 , Enfermeiras e Enfermeiros , Idoso , COVID-19/epidemiologia , Estudos Transversais , Humanos , Casas de Saúde , Pandemias , Inquéritos e Questionários , Carga de Trabalho/psicologiaRESUMO
BACKGROUND: Family risk factors, e.g. low socioeconomic status or parental mental health disorders, can affect children's health and development. Thus, targeted preventive services for families with psychosocial burden are crucial. The German Early Childhood Intervention (ECI) program is a preventive approach that aims to strengthen parent's resources by supportive services. However, research has revealed that only a proportion of the families considered to have substantial risk factors access the ECI program. To increase pediatricians' skills in identifying risk factors, and to improve the cross-sectoral collaboration between relevant professionals and the referral of families to supportive services, the PATH-intervention (Pediatric Attention To Help) was developed. The PATH-intervention includes interprofessional quality circles and a one-day training program for the pediatricians. This study aims to evaluate this complex cross-sectoral care intervention for families with psychosocial burden. METHODS: Using a prospective quasi-experimental, controlled (matched-pair), longitudinal mixed-method design, we will compare families under treatment of pediatricians trained in the PATH-intervention with families under treatment of a control group of pediatricians. Participating families are asked to complete online-surveys. As a primary outcome, we will examine the use of supportive services of the ECI by burdened families. Secondary outcomes are the proportion of correctly identified families with psychosocial burden by the pediatricians, as well as information provision and motivation of the families to use the supportive services. Additionally, the cost-effectiveness ratio will be investigated. In the process evaluation, we will qualitatively explore the acceptance of the PATH-intervention of all involved stakeholders and the treatment fidelity of the trained pediatricians. DISCUSSION: This study will determine whether the PATH-intervention enables the pediatricians to identify and recommend supportive services to burdened families, as well as the families' use of the supportive services of the ECI. Qualitative data will give insight into the acceptance of the intervention from the perspective of all stakeholders and the treatment fidelity. Results of this study could be the starting point for the broader implementation of the PATH-intervention as standard care. TRIAL REGISTRATION: German Clinical Trials Register (DRKS): DRKS00023461 (3rd December 2020); WHO UTN: U1111- 260-6575.
Assuntos
Motivação , Criança , Pré-Escolar , Análise Custo-Benefício , Humanos , Estudos Prospectivos , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Care homes were hit hard by the COVID-19 pandemic. Although high levels of psychosocial burden (i.e., anxiety, depression and stress) during the pandemic have been described for healthcare workers in hospitals, evidence on the psychosocial burden for nurses in care homes during the pandemic is scarce. METHODS: A total of 811 nurses participated in a retrospective online survey between November 2020 and February 2021. Information about the COVID-19 situation (i.e., working demands, COVID-19 cases in their facility, and COVID-19-related burden) of nurses in German care homes during the first wave of the pandemic (March 2020 to June 2020) was gathered. The Stress Scale of the Depression Anxiety and Stress Scales (SDASS-21), the Generalized Anxiety Disorder Scale-2 (GAD-2), the Patients-Health-Questionnaire-2 (PHQ-2), and the Copenhagen Psychosocial Questionnaire (COPSOQ) were used to screen for psychosocial burden. RESULTS: Among nurses, 94.2% stated that working demands since the COVID-19 pandemic increased. Further, 59.1% showed clinically relevant levels of either stress, anxiety, and/or depression. Multiple regression analysis showed significant associations between COVID-19-related burden and qualification (p < .01), dissatisfaction with COVID-19 management of care home manager (p < .05), COVID-19-related anxiety (p < .001), and dementia as a focus of care (p < .05). Stress, depression, and anxiety showed associations with COVID-19 related burden at work (p < .01), COVID-19-related anxiety (p < .001), social support (p < .01), and sense of community (p < .05). Stress was also associated with COVID-19 cases among residents (p < .05), and size of care home (p < .05). CONCLUSION: Short- and long-term strategies (i.e., psychosocial counseling, mandatory team meetings, more highly qualified nurses, additional training) in the work environment of nursing, in crises, but beyond, should be encouraged to reduce the burden on nursing staff in care homes.
RESUMO
BACKGROUND: Family caregivers are faced with a variety of challenges and burdens. Recent online studies showed that these burdens have increased even more during the corona pandemic. Here we conducted a low-threshold written survey to assess psychological distress in highly burdened family caregivers during the corona pandemic in Germany. METHOD: Both quantitative and qualitative analyses were conducted within the context of a tiered counselling intervention study for highly burdened family caregivers (Nâ¯= 165) to assess their experience of burden, anxieties, worries and desires regarding care. RESULTS: A quarter of all caregivers (26%) reported high fear of becoming infected with SARS-CoV2 and 50% feared their care recipient could get infected. Almost half of all caregivers reported (47%) that corona had a high impact on the care situation and increased the burden of caregiving (51%). A loss of professional support and less time for themselves were reported most often. The desire for additional support was frequently expressed. The level of care, the age of the caregiver and the previous use of care services were found to be predictors of the psychological distress experienced by care recipients. CONCLUSION: The results illustrate an increased burden related to caregiving during the corona pandemic. In order to cope with this complex additional burden, there is an even higher need for support to improve care and social participation for both care recipients and caregivers during the pandemic.
Assuntos
COVID-19 , Pandemias , COVID-19/epidemiologia , Cuidadores/psicologia , Humanos , SARS-CoV-2 , Inquéritos e QuestionáriosRESUMO
The COVID-19 pandemic poses a risk to mental health and may disproportionately affect people living with HIV (PLWH). This study examined the interaction of social support and resilient coping in predicting depressive symptoms among PLWH. PLWH residing in Buenos Aires, Argentina and in Miami, Florida (US) were asked to complete an anonymous survey on the impact of COVID-19. Statistical analysis included ordinary least squares regression. A total of 1,554 participants were included. Mean age was 47.30 years; 63.70% were men. A test of three-way interaction of social support × resilient coping × study site indicated differences by site (b = -0.63, p = 0.04, 95%CI [-1.24, -0.02]). In Argentina, higher levels of social support and resilient coping were associated with lower depressive symptoms. Lower levels of social support and resilient coping were associated with higher depressive symptoms. The impact of COVID-19 on mental health illustrates the need for developing innovative strategies to support resilience and to enhance coping with stress and adversity among PLWH.
RESUMEN: La pandemia de COVID-19 presenta riesgos importantes para la salud mental y puede afectar desproporcionadamente a personas con VIH. Este estudio examinó el efecto entre el apoyo social y la resiliencia para afrontar situaciones difíciles en predecir síntomas depresivos en personas con VIH. Personas con VIH residentes de Buenos Aires (Argentina) y Miami, Florida (EE.UU) completaron una encuesta anónima sobre el impacto del COVID-19. El análisis estadístico incluyó un modelo clásico de regresión lineal con mínimos cuadrados ordinarios. Se incluyeron 1554 participantes. La edad promedio fue 47.30 años y 63.7% eran hombres. La prueba de interacción de apoyo social × resiliencia para hacer frente a situaciones difíciles × país indicó diferencias entre países (b = −0.63, p = 0.043, IC 95% [1.24, −0.02]). En Argentina, los participantes con mayor apoyo social y resiliencia para hacer frente a situaciones difíciles mostraron síntomas depresivos más bajos; y aquellos con menor apoyo social y resiliencia para hacer frente a situaciones difíciles, mostraron síntomas depresivos más altos. Este efecto no se observó en los participantes de Miami. El impacto de COVID-19 en la salud mental en personas con VIH ilustra la necesidad de desarrollar estrategias innovadoras para apoyar la resiliencia y mejorar el enfrentamiento del estrés y la adversidad.
Assuntos
COVID-19 , Infecções por HIV , Adaptação Psicológica , Argentina/epidemiologia , Florida/epidemiologia , Infecções por HIV/epidemiologia , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Pandemias , SARS-CoV-2 , Apoio SocialRESUMO
Hidradenitis suppurativa (HS) causes significant psychological distress in patients. We aimed to investigate the stigmatization level of HS patients and to determine the related physical, social, and psychological factors. A questionnaire with 22 questions about the physical and psychosocial problems related to HS was administered to 29 male and 34 female patients between the ages of 18 and 66 to evaluate the thoughts, emotions, attitudes, and behaviors of patients. Each patient filled Dermatology Life Quality Index, Beck Depression Inventory, Liebowitz Social Anxiety Scale, Body Image Scale, and 6-item Stigmatization Scale. Hurley classification was used to assess severity of disease. Patients with HS feel stigmatized depending on physical and psychosocial problems caused by the disease. Higher stigmatization scores correlated with higher scores of depression (r: .437, P < .001), social anxiety (r: .263, P: .03), and worse life quality (r: .522, P < .001), and body image perception (r: .696, P < .001). The degree of stigmatization was closely associated with the presence of painful lesions and disruption of socializing (P: .021 and .033, respectively). Disease severity (ß: 5.12, P: .003 for moderate disease) and reporting feeling psychologically negatively affected due to HS (ß: 4.26 P: .007) were the two main predictors of stigmatization in patients with HS. Cross-sectional nature of the study is the limitation. In conclusion, the stigmatization level of patients with HS is strongly related to disease severity and poor mental health.
Assuntos
Hidradenite Supurativa , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Hidradenite Supurativa/diagnóstico , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Qualidade de Vida , Índice de Gravidade de Doença , Estereotipagem , Adulto JovemRESUMO
The study was designed to investigate the impact of the Coronavirus Disease 2019 (COVID-19) pandemic on mental health and perceived psychosocial support for elderly psychiatric patients in a longitudinal design. n = 32 patients with affective or anxiety disorders aged ≥60 years were included. Telephone interviews were conducted in April/May 2020 (T1) and August 2020 (T2). The psychosocial impact (PSI) of the pandemic and psychopathology were measured. Changes between T1 and T2 were examined. Patients' psychosocial support system six months before the pandemic and at T1/T2 was assessed. We found a significant positive correlation between general PSI and depression as well as severity of illness. General PSI differed significantly depending on social contact. Neither general PSI nor psychopathology changed significantly between T1 and T2. At T1, patients' psychosocial support systems were reduced as compared to six months before. Patients reported an increase in psychosocial support between T1 and T2 and high demand for additional support (sports, arts/occupational therapy, physiotherapy, psychotherapy). Elderly psychiatric patients show a negative PSI of the pandemic. They are likely to suffer from an impaired psychosocial situation, emphasizing the importance of developing concepts for sufficient psychosocial support during a pandemic.
Assuntos
Transtornos de Ansiedade , COVID-19 , Transtornos do Humor , Pandemias , Pacientes , Idoso , Idoso de 80 Anos ou mais , Transtornos de Ansiedade/psicologia , Transtornos de Ansiedade/terapia , COVID-19/epidemiologia , COVID-19/psicologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Transtornos do Humor/psicologia , Transtornos do Humor/terapia , Pacientes/psicologia , Pacientes/estatística & dados numéricosRESUMO
Neurofibromatosis type 1 (NF1) is a genetic condition characterized by numerous somatic manifestations. The psychosocial burden in adults has rarely been studied. We examined the prevalence of self-reported impairment of quality of life (QoL), symptoms of anxiety and depression and need for support, associated with disease severity and visibility. We conducted a nationwide cross-sectional study of all 467 adults with NF1 diagnosed between 1977 and 2016 at one of the two national centers for rare diseases in Denmark. A total of 244 (56% response rate) completed a questionnaire that included standard measures of QoL, symptoms of depression and anxiety, indicators of disease-related severity, visibility, and need for professional support. Associations between disease severity and visibility and psychosocial burden were analyzed in descriptive and multivariate models. We observed impaired QoL (mean = 81.3; 95% CI, 76.2; 86.4); 19% reported symptoms of depression (mean = 5.7; SD = 5.4), and 15% reported anxiety (mean = 5.1; SD = 5.2) at a clinical level. Adults with NF1 also reported requiring professional support for physical, psychological, and work-related problems. Disease severity and (partly) visibility were significantly (p < .0001) associated with psychosocial well-being and a requirement for support. This study provides new understanding of the factors associated with impaired QoL, indicating that follow-up care should be optimized into adult life.
Assuntos
Ansiedade/etiologia , Depressão/etiologia , Neurofibromatose 1/psicologia , Qualidade de Vida , Adolescente , Adulto , Idoso , Ansiedade/epidemiologia , Ansiedade/psicologia , Estudos Transversais , Dinamarca/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neurofibromatose 1/etiologia , Prevalência , Qualidade de Vida/psicologia , Adulto JovemRESUMO
BACKGROUND: Patients with liver cirrhosis often suffer from complications such as ascites, gastrointestinal bleeding, and infections, resulting in impaired quality of life. Frequently, the close relatives of patients also suffer from a lower quality of life in chronic diseases. In recent years, acute-to-chronic liver failure has been defined as a separate entity with high mortality. Often several organs are affected which makes intensive care therapy necessary. Little is known about the influence of acute-on-chronic-liver failure (ACLF) on the quality of life of patients and the psychosocial burden on close relatives. AIM: The purpose of this prospective study is to investigate the influence of decompensated liver cirrhosis and the onset of ACLF of the patient's' quality of life and the psychosocial burden of close relatives. METHOD: In this non - randomized prospective cohort study a total of 63 patients with acute decompensation of liver cirrhosis and hospital admission were enrolled in the study. To assess the quality of life of patients, the disease specific CLDQ questionnaire was assessed. In addition. Quality of life and psychosocial burden of first degree relatives was measured using the generic SF-36 questionnaire as well as the Zarit Burden Score. RESULTS: 21 of the 63 patients suffered from ACLF. Patients with ACLF showed a lower quality of life in terms of worries compared to patients with only decompensated liver cirrhosis (3,57 ± 1,17 vs. 4,48 ± 1,27; p value: 0,008) and increased systemic symptoms (3,29 ± 1,19 vs. 4,48 ± 1,58; p value: 0,004). The univariate analysis confirmed the link between the existence of an ACLF and the concerns of patients. (p value: 0,001). The organ failure score was significantly associated with overall CLDQ scores, especially with worries and systemic symptoms of patients. Interestingly the psychosocial burden and quality of life of close relative correlates with patient's quality of life and was influenced by the onset of an acute-on-chronic liver failure. CONCLUSION: Patients with decompensated liver cirrhosis suffer from impaired quality of life. In particular, patients with ACLF have a significantly reduced quality of life. The extent of the psychosocial burden on close relative correlates with poor quality of life in patients with decompensated liver disease and is influenced by the existence of ACLF.
Assuntos
Insuficiência Hepática Crônica Agudizada/psicologia , Doença Hepática Terminal/psicologia , Qualidade de Vida , Insuficiência Hepática Crônica Agudizada/fisiopatologia , Adulto , Idoso , Estudos de Casos e Controles , Doença Hepática Terminal/fisiopatologia , Família/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Escores de Disfunção Orgânica , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
The study investigates the socio-religious factors in the propagation of genetically inherited disease of Beta thalassemia. The disorder which reportedly has a significant protraction through repeated cousin marriages results in the social maladjustment of the parents of the sick children due to constant depression, anxiety, and weak social interaction and may lead to social isolation as well. This research aims to find out the significant effect of socio-religious trends on psychosocial burden of beta thalassemia major among cousin and non-cousin couples in the province of Punjab in Pakistan. It takes a sample of 932 parents of sick children, among whom 735 were married with cousins and 197 with non-cousins, for data collection. The findings reveal that inadequate knowledge of the disease, insufficient or misdirected social support, stigmatization, and marriage breakups caused by the disease, superstitions, and misinterpretations of religion and the subsequent practices accordingly as significant predictors of psychosocial burden of beta thalassemia major among non-cousins and cousin couples. Additionally, it also finds patriarchy as only significant predictors of outcome variable among cousin couples.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Casamento/etnologia , Religião , Estereotipagem , Estresse Psicológico , Talassemia beta/psicologia , Adaptação Psicológica , Adolescente , Adulto , Consanguinidade , Características Culturais , Humanos , Pessoa de Meia-Idade , Paquistão , População Rural , Classe Social , Apoio SocialRESUMO
PURPOSE: Depressive symptoms of patients with intracranial tumors need to be assessed adequately. The Patient Health Questionnaire for Depression and Anxiety (PHQ-4) is an ultra-short screening tool consisting of four items, a cutoff of six indicates depressive symptoms. The aim was to assess patients' psychological burden by the PHQ-4 compared with the results of well-established screening instruments. METHODS: Patients were screened three times after primary diagnosis postoperatively (t1), after 3 (t2) and 6 (t3) months using the PHQ-4, the Hornheide Screening Instrument (HSI), the NCCN Distress Thermometer (DT), and the European Organization for Research and Treatment of Cancer Quality of Life Core Questionnaire with its brain module (EORTC QLQ-C30 + BN20). Demographic, tumor-related data, and Karnofsky Performance Scale (KPS) were analyzed. A cutoff value for PHQ-4 indicating a need for support or increased distress was determined by applying receiver operating characteristic (ROC). RESULTS: The proportion of patients reaching a total score ≥ 6 was n = 32 out of 139 (23%) at t1; at t2, n = 12 out of 117 (10%) scored ≥ 6. At t3, n = 8 out of 96 (8%) scored ≥ 6. At t1, PHQ-4 scores did not differ significantly between gender, age groups, and tumor laterality. A cutoff value of 2.5 was identified to moderately discriminate between patients in or not in distress (sensitivity 76.8%) and between patients wishing further, specific support or not (sensitivity 82.5%). CONCLUSION: The PHQ4 can be applied in this patient cohort to detect those with relevant psychological comorbidities. The cutoff value should be re-evaluated in a larger cohort as we observed that a cutoff of 6, as recommended previously, may be too high in order to detect affected patients adequately.
Assuntos
Transtornos de Ansiedade/diagnóstico , Ansiedade/diagnóstico , Neoplasias Encefálicas/psicologia , Depressão/diagnóstico , Transtorno Depressivo/diagnóstico , Ansiedade/psicologia , Transtornos de Ansiedade/psicologia , Estudos de Coortes , Depressão/psicologia , Transtorno Depressivo/psicologia , Feminino , Humanos , Avaliação de Estado de Karnofsky , Masculino , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Psicometria , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Because of demographic changes the nursing care sector is faced with a lack of qualified employees in the medium and long term. The shortage in the work force is caused by high workloads and unfavorable working conditions. In response to this shortage, there have been attempts to recruit qualified nursing staff from abroad and also to improve the integration of people with a migration background living in Germany into the job market. METHODOLOGY: Based on a quantitative cross-sectional study of 366 nurses, the psychosocial burden and strains among employees with a migration background (nâ¯= 112) and without a migration background (nâ¯= 254) were examined. For this purpose, 13 scales of the German version of the Copenhagen Psychosocial Questionnaire (COPSOQ) were used for the assessment of psychosocial factors at work. The results were compared with professional group-specific reference values (geriatric care) from the COPSOQ database. RESULTS: The comparison of nursing staff with and without a migration background revealed that the emotional demands, work-privacy conflict and role conflicts factors received a significantly better rating among nursing staff with a migration background, while development opportunities were rated worse by this population group. The surveyed nursing staff exhibited higher stress values compared to the COPSOQ reference group in almost all scales. CONCLUSION: Nursing staff with a migration background need to be supported with respect to development opportunities. Suitable education and training measures may offer adequate career perspectives and may encourage employees to stay in their jobs.
Assuntos
Efeitos Psicossociais da Doença , Emigrantes e Imigrantes/psicologia , Enfermagem Geriátrica , Recursos Humanos de Enfermagem/psicologia , Apoio Social , Carga de Trabalho/psicologia , Local de Trabalho/psicologia , Idoso , Estudos Transversais , Emoções , Emprego/organização & administração , Emprego/psicologia , Alemanha , Humanos , Satisfação no Emprego , Inquéritos e Questionários , Local de Trabalho/organização & administraçãoRESUMO
BACKGROUND: The essential physical role, visibility and social importance of the hands place a major psychological burden on patients with hand eczema. OBJECTIVES: The aim of this study was to identify the psychological, social and clinical characteristics of patients with hand eczema, in particular the prevalences of depression, anxiety, suicidal ideation, and comorbidities. MATERIALS AND METHODS: Data on patients with hand eczema were analysed from a large European multicentre study conducted with dermatology outpatients from 13 countries. Groups of patients and controls were compared to analyse the psychological burden of hand eczema. RESULTS: Female patients with hand eczema had higher Hospital Anxiety and Depression Scale (HADS) scores for anxiety (n = 86, median = 7.0) than controls (n = 900, median = 5.0, P = .02), and for depression (median = 4.0) than controls (3.0, P < .001). Patients with high suicidal ideation, with low socioeconomic status and who were widowed or divorced were more likely to fulfil the HADS criteria for anxiety [odds ratio (OR) > 1, P = .038, P < .001, and P < .001, respectively]. The median Dermatology Life Quality Index score was 7.0 (n = 68). DISCUSSION: This study identifies a specific psychological burden experienced by hand eczema patients, highlighting the need for focused psychosocial interventions. Physicians in particular should be aware of the need to identify anxiety and depression in female patients.
Assuntos
Ansiedade/psicologia , Depressão/psicologia , Eczema/psicologia , Dermatoses da Mão/psicologia , Adulto , Dermatite Alérgica de Contato/psicologia , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Autoimagem , Distribuição por Sexo , Ideação SuicidaRESUMO
Midwives and Nurses in Early Childhood Intervention: The Benefit of Additional Qualification Abstract. BACKGROUND: Early childhood interventions are locally and regionally organized support services for families from pregnancy until the end of the third year of life. The interventions promote diverse measures to enhance parental skills in order to improve developmental and living circumstances. Midwives and nurses with additional qualification support burdened families in early childhood intervention. METHOD: Within a retrospective survey (standardized interviews, CAPI) mothers' (N = 298) perspective of the benefit of the home visiting support is assessed. Data from two groups were compared: (1) mothers in the care of a midwife or nurse with additional qualification (GruppeGFK + Quali) and (2) mothers cared for by a midwife or nurse without additional qualification (GruppeGFK). RESULTS: (1) Families with weighted levels of psychosocial burdens reported an enhanced need for help. (2) Midwives and nurses with additional qualification support more frequently families with high levels of psychosocial burdens. (3) Mothers with care of midwives and nurses with additional qualification reported this support as more useful in relation to every day demands than mothers with regular care after birth (questionnaire for evaluation of the received support: GruppeGFK + Quali: mean = 2.57; GruppeGFK : mean = 1.97; t (121) = 2.799, p = .003). CONCLUSION: The study complements results of national and international studies showing that families with high levels of psychosocial burdens accept home visiting support. Furthermore, this support seems to be useful. An increase of the offer and the additional qualification is recommended for improving the developmental and living conditions of families with psychosocial burdens.
Assuntos
Competência Clínica , Educação não Profissionalizante/organização & administração , Educação Continuada em Enfermagem , Enfermagem Familiar/educação , Tocologia/educação , Papel do Profissional de Enfermagem , Enfermeiros Pediátricos/educação , Adulto , Maus-Tratos Infantis/prevenção & controle , Pré-Escolar , Comportamento do Consumidor , Feminino , Alemanha , Humanos , Lactente , Recém-Nascido , Masculino , Enfermeiros de Saúde Comunitária/educação , Gravidez , Apoio Social , Estresse Psicológico/complicações , Inquéritos e QuestionáriosRESUMO
The psychiatric, psychosocial, and existential/spiritual pain determined by chronic medical disorders, especially if in advanced stages, have been repeatedly underlined. The right to approach patients as persons, rather than symptoms of organs to be repaired, has also been reported, from Paul Tournier to Karl Jaspers, in opposition and contrast with the technically-enhanced evidence-based domain of sciences that have reduced the patients to 'objects' and weakened the physician's identity deprived of its ethical value of meeting, listening, and treating subjects. The paper will discuss the main psychosocial and existential burden related to chronic and advanced medical illnesses, and the diagnostic and therapeutic implications for a dignity preserving care within a person-centred approach in medicine, examined in terms of care of the person (of the person's whole health), for the person (for the fulfilment of the person's health aspirations), by the person (with physicians extending themselves as total human beings), and with the person (working respectfully with the medically ill person).